From My Heart, All About Hers.

Dolly was seen in the Heart Center at our larger, local children’s hospital. Our smaller, local one sees our other children and does a wonderful job, but we see the more experienced folks for Dolly’s very complex heart. We are grateful for the opportunity to see the best of the best. Because we searched them out, we will be able to attempt a more complex FULL REPAIR of Dolly’s heart.

Yes, we are going to attempt to fully repair Dolly’s heart!!!

The girl who came here “inoperable” because of her lung damage and backwards, misshapen heart is being given a chance to have a full, four chambered heart. The process of giving her this is a complex one and will involve some major surgical prowess, but we have just the guy for it on our team. Again, we are blessed.

For those of you who love the technical explanation, we are going to attempt to put a HUGE Dacron patch between Dolly’s really good left ventricle and her tiny, less functional right ventricle. She has a little bit of wall between the two that we can, God willing, sew the patch to. With time, the heart muscle will grow around the patch and cement it into place. Dolly’s small, weaker pumping chamber will always be smaller and weaker, but we hope that between its semi-function and her left ventricle’s excellent function, her heart will compensate.

We have a few hurdles to straddle. We need her tricuspid valve to stay out of the way and undamaged. Please, oh please. We need her conduction system to keep functioning well so that she doesn’t need a pacemaker. And, ultimately, we need that patch not to leak. Should any of these happen, and the procedure fail, either in the OR, or after, we will still have the option of doing a two-stage palliative repair. Yes, she will need TWO more open heart surgeries. And, palliative means palliative. She will need a transplant at some point. We will be saddened by this, but, we had no options when she got here. So, to be at this point is a true miracle.

We took a chance by stepping out for the tiny, bald girl who was starving in China. Words cannot describe how changed we are because of her. She has done so much more for the eleven other people who live in this home than we have ever, or will ever, do for her. That sounds like it can’t possibly be true, but it is. It is my firm belief that everyone has one person who teaches them what life is all about, how to REALLY live, what hope means, and how to find purpose on the small amount of time we have on this earth. Some people choose to listen faithfully to that person and absorb what they have to teach, to allow themselves to be guided. Some people choose to walk away from their guide, because the road is too hard, and the risks are too great. My guide came in a tiny package, but has the loudest, most faithful voice of anyone I have ever met. We listen to her, fight for her, and will continue to advocate for the best of the best for her. I am so very lucky to call myself her mom.

As our miracle day came to a close yesterday, and I lay in bed contemplating what a full repair will mean for our girl, I couldn’t help but think what my life would be like had I walked away from her tiny picture and said ‘I’m sorry, this is too much. It’s too risky. I can’t put my heart, or the hearts of my husband and children, at risk to help hers. I can’t.’ Who would I be? Not the person, or mom, that I am today. My mind wandered back to all the faces who still wait.

February is heart month. It is now drawing to a close. These are just a few of the faces that wait, in China, for a mom to be changed by them. I am happy to answer questions about CHD, parenting a child labeled “terminal” or stepping out to adopt even though there are now, and always will be, unknowns. Words can’t do justice to how you will be changed by your child.

–FullPlateMom, who wonders if you have a tiny guide in your life too. If so, I want to hear your story. Please comment about your child below. How have they changed YOU?

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I have a couple, but the two who are so full of life and joy despite what life has dealt them, are Evie and Jasmine. My world has been forever changed by two girls who we didn’t set out to adopt. That is what gets me – we would not have readily went looking for them – but they found us and we are forever changed and blessed because they are in our lives.

Our youngest was a ‘surprise’ adoption, our first child from China…fifth in our family. She had similar ‘needs’ (on paper) to 2 of her brothers. When we met her, we knew that she was a very sick little girl. Failure to thrive, feeding tube placed right after she came home, cognitive disability significantly beyond orphanage delays….she’s been home for 2 plus years, and her progress never ceases to amaze us! She is walking, attempting to run, eating solid foods…but the best part, she can make ANY of us smile when we are feeling bad. And, we went back to China less than 2 years later to adopt another beautiful girl…we have said we were ‘done’ a few times, but now we have six beautiful kiddos!